schizophrenia

It’s been a long time since I’ve written. Mostly because I’ve been busy in my new job and with suddenly having a new family to adjust into.

When I started working clinically with adults again, it felt like coming home. The only worry was that I just had a contract for one year, so I was nervous about if I would get a permanent job. I really love it here, there a so many experienced therapists and in addition to that, many group therapies for different diagnoses. When I started, I was asked if I wanted to try to be a group therapist myself, something I was really excited about. This fall, I got the chance to be a therapist together with two other colleagues, and I have already learnt so much. The group is for patients with PTSD, and we work after a manual that focus on stabilization and education about trauma. To see how healing it is for traumatized individuals to meet others who struggle with the same symptoms as they do, has been a revelation. Logically, I know how good it must feel to meet others in the same situation as yourself, but seeing it with my own eyes is uplifting. I can almost see the light in the group members eyes when they emotionally feel that their reactions might be normal based on what they’ve been through.

In August, I had another interview with my leader, after I applied for a permanent job here. On my birthday, my leader came into my office and delivered the good news: I got the job! So now I know I can be here as long as I want, and it feels amazing. My leader told me that they wanted to transfer me to working with psychosis, something I haven’t done much in the past. But I look forward to it. I have met people with schizophrenia before, and those I’ve talked with are often fascinating people with many resources. I also have a soft spot for them since my grandfather had schizophrenia, and he was one of the kindest human beings I’ve ever met.

It will be a bit sad to say goodbye to the patients I’ve having now, but I’m ready for new tasks and new challenges. I’ve always liked to learn more, and this is a chance to work with the system around the patients, and working in a team with experienced therapists who love what they do.

So, even if it’s always scary to start with something new, I am ready to grow and learn.

Halting Schizophrenia Before It Starts

Meghan, 23, began experiencing hallucinations at 19. “Driving home, cars’ headlights turned into eyes. The grills on the cars turned into mouths and none of them looked happy. It would scare the crap out of me,” Meghan says.

Marvi Lacar for NPR

The important thing is that Meghan knew something was wrong.

When I met her, she was 23, a smart, wry young woman living with her mother and stepdad in Simi Valley, about an hour north of Los Angeles.

Meghan had just started a training program to become a respiratory therapist. Concerned about future job prospects, she asked NPR not to use her full name.

Five years ago, Meghan’s prospects weren’t nearly so bright. At 19, she had been severely depressed, on and off, for years. During the bad times, she’d hide out in her room making thin, neat cuts with a razor on her upper arm.

Meghan had been depressed off and on for years, but the hallucinations signaled a subtle shift in her symptoms.

“Her depression just sucked the life out of you,” Kathy, Meghan’s mother, recalls. “I had no idea what to do or where to go with it.”

One night in 2010, Meghan’s mental state took an ominous turn. Driving home from her job at McDonald’s, she found herself fascinated by the headlights of an oncoming car.

“I had the weird thought of, you know, I’ve never noticed this, but their headlights really look like eyes.”

To Meghan, the car seemed malicious. It wanted to hurt her.

Kathy tried to reason with her.

“Honey, you know it’s a car, right? You know those are headlights,” she recalls pressing her daughter. “You understand that this makes no sense, right?”

“I know,” Meghan answered. “But this is what I see, and it’s scaring me.”

In other words, Meghan had insight, defined in psychiatry as the ability to understand that one’s unusual experiences are attributable to a mental illness.

What Meghan saw did not fit with what she believed. She knew she was hallucinating.

Meghan keeps a photo of her cat, Boo, on the wall in her bedroom. “She would stay in her room and keep to herself,” Kathy, Meghan’s mother, says. “Sometimes that was a good thing because her depression just sucked the life out of you.”

Marvi Lacar for NPR

It’s the loss of insight that signals a psychotic break. This can lead to several different diagnoses, but in people ultimately diagnosed with schizophrenia, the break signals the formal onset of the disease. Typically, a first psychotic break occurs in a person’s late teens or early 20s. In men, the range is 15 to 24; in women, 25 to 34.

That first psychotic break can lead to a series of disasters: social isolation, hospitalization, medications with sometimes disabling side effects, and future psychotic episodes.

So, what if you could intervene earlier, before any of that? Could you stop the process from snowballing?

At 19, Meghan hadn’t had a psychotic break. She still had insight. That made her eligible for a new type of program taking shape in California that aims to prevent schizophrenia before it officially begins.

The program draws on research suggesting that schizophrenia unfolds much more slowly than might be obvious, even to families.

“You start to see a decline in their functioning,” says Dr. Daniel Mathalon, who studies brain development in the early stages of psychosis at the University of California, San Francisco.

“They were doing better in school, now they’re doing worse,” he says. “Maybe they had friends but they’re starting to be more isolated.”

Eventually, these subtle behavioral shifts may take on a surreal quality. A young person may hear faint whispers or hissing, or see flashes of light or shadows on the periphery.

“I valued my ability to think and learn,” Meghan says. “To know that the one thing I valued so highly was dissolving away, that I was losing chunks of my sanity with every hallucination. … That was more terrifying than the monsters that I saw could ever be.”

Marvi Lacar for NPR

Psychiatrists have a word for this early stage: prodromal.

Meghan took a screening test developed at Yale University Medical School that identified her as possibly within the prodromal stage of psychosis. That is, her symptoms could be indicative of early psychosis, but weren’t predictive.

VIPS is one of a handful of programs that have sprung up in California in recent years, based on a model developed in Maine by psychiatrist Dr. Bill McFarlane.

McFarlane believes that psychosis can be prevented with a range of surprisingly low-tech interventions, almost all of which are designed to reduce stress in the family of the young person who is starting to show symptoms.

McFarlane cites research done at UCLA suggesting that certain kinds of family dynamics — families that don’t communicate well, or are overly critical — can make things worse for a young person at risk of schizophrenia.

Meghan’s family credits the VIPS program for her transformation. “She’s not the broken little girl that she was three years ago,” Meghan’s stepfather, Charlie, says.

Marvi Lacar for NPR

“Our theory,” says McFarlane, “was that if you could identify these young people early enough, you could alter some of those family patterns. Then you could work with the family to start behaving not just normally, but in a way that was smarter.”

McFarlane’s programs bring families in for twice-monthly multifamily group therapy sessions, where participants take a nuts-and-bolts approach to resolving disputes at home and softening their responses to what the young person is going through.

“We assume parents can’t figure this out alone,” says McFarlane.

In some cases, participants are also prescribed antipsychotic drugs, especially one called Abilify, which McFarlane and others believe can stem hallucinations.

McFarlane himself is careful about recommending antipsychotic medications.

The drugs, he says, should be used cautiously, at lower doses than would be prescribed for full psychosis, and even then only in young people who aren’t responding to other treatments.

But in programs inspired by his model, the drugs appear to be widely prescribed, including in clients as young as 10 or 13. This fact has become a flashpoint in the conversation around schizophrenia prevention.

“No one is harder to diagnose than a child or a teenager,” says Dr. Allen Frances, a former chair of the psychiatry department at Duke University and chair of the task force that produced the fourth revision of the Diagnostic and Statistical Manual, orDSM-IV, the standard reference for psychiatric diagnoses.

“There are rapid developmental changes from visit to visit,” he says. “The tendency to overdiagnose is particularly problematic in teenagers.”

Frances points to studies showing that if you take three kids, all experiencing those surreal early symptoms, only one will get schizophrenia.

So what about the other two?

“We have to be careful of any new fad in psychiatry. The field has been filled with fads in the past, and often we learn in retrospect that they’ve done much more harm than good.

– Dr. Allen Frances

Frances says these kids are wrongly labeled and stigmatized. Their parents are terrified. And in many cases, they will be prescribed antipsychotic drugs, which can have serious side effects and haven’t been studied well in children.

“We have to be careful of any new fad in psychiatry,” says Frances. “The field has been filled with fads in the past, and often we learn in retrospect that they’ve done much more harm than good.”

But what Frances calls a fad is to others a model for mental health care.

To see these programs in action, the best place to go is California, where over the past few years a handful of programs have sprung up based on McFarlane’s PIER model.

One, in San Diego, is called Kickstart. Like the others, it’s paid for by a state tax on millionaires, passed by voters in 2004, that funds mental health. Services — everything from homework help to family therapy and outings such as kite-flying expeditions — are offered for free.

Joseph Edwards, Kickstart’s assistant program director, says for teenagers who might be developing schizophrenia, just being outside, with friends, is a kind of therapy.

“They’ll want to isolate,” says Edwards. “There’s sensitivity to a lot of stimulation. And a lot times we’ll see what we call day/night reversal, where they’ll stay up all night and go to sleep in the daytime.”

Edwards says if a teenager is really isolating, a Kickstart worker will drive to his or her house and cajole the person out. Anything, he says, to keep them engaged, with friends in school or at work.

Tony, 13, spends an afternoon at an arcade with Ashley Wood, his occupational therapist in the Kickstart program in San Diego.

Marvi Lacar for NPR

At an arcade in a strip mall, we meet Ashley Wood, one of Kickstart’s occupational therapists. Wood brought her client, 13-year-old Tony, here as a reward for being cooperative in therapy.

We aren’t using Tony’s full name because he’s a minor, at the request of his parents.

Wood has an easy laugh and teases Tony gently to pull him out of his shell.

“When we first met, he was so quiet,” she says, laughing. “He’s like, ‘Who is this chick?’ ”

“Nah,” says Tony, smiling shyly. “I was being a jerk.”

Tony had been getting in fights. He was angry at his mom, angry in school. And there was something else.

“I used to see stuff and hear [stuff],” he tells me.

“Like what?” I ask him. “Like … weird objects,” he responds. When I press him for more details, he shakes his head.

Are Tony’s symptoms the beginning of schizophrenia? Or just the routine weirdness of a teenage brain taking shape?

No one — not Wood, not his therapists — can say for sure.

Wood says what she’s teaching him will be helpful either way: “When he’s frustrated at school or at home, instead of immediately responding, kind of finding a way to communicate. So we’re trying to work on the impulse control as well.”

That’s one reason that last year, the American Psychiatric Association opted to exclude the idea of “psychosis risk syndrome” from the DSM-5, the latest version of the manual of mental disorders. The screening test is generally considered to be only 30 percent accurate.

In 2011, a review of prodrome intervention programs called the idea of intervention in pre-schizophrenia “inconclusive.”

McFarlane believes the benefits of these programs are borne out in the work done at his clinic and others based on his model. In July, he published the results of a two-year study of two groups of young people at risk for, or in the early stage of, schizophrenia, which showed better functional outcomes for those who went through treatment.

He and other proponents say schizophrenia’s early window may be too precious to miss.

“We’re running up against the limits of what we can do for patients who develop schizophrenia, once it goes to chronic stages,” UCSF’s Mathalon says. “I think this is a direction we have to go in, but we have to do it carefully.”

When you talk to people who have been through these programs and ask them what helped them, it is not the drugs, not the diagnosis. It’s the lasting, one-on-one relationships with adults who listen, like Ashley Wood.

“I thought she’d forever be marginal, forever be medicated. I thought we’d just have to get used to it.

– Kathy, Meghan’s mom

Tiffany Martinez, an early client of Bill McFarlane’s in Maine, chokes up when asked to describe what she thinks helped her climb out of an incipient mental health crisis that began when she was in college.

“To share such personal intimate details, you know? To have these people working so hard on it and so devoted and invested in the work,” Martinez, now age 26, says, “it’s like getting a chance. Just the program, what the program stands for alone, is hope.”

That same relief is palpable when you talk to Meghan’s mom, Kathy, and stepfather, Charlie.

“I thought we were going to have to take care of her for the rest of her life,” says Kathy. “I thought she’d forever be marginal, forever be medicated. I thought we’d just have to get used to it.”

Today Meghan is off all her medications. She’s animated, playing board games with her family, excited about being back in school.

Her family credits the VIPS program.

“We were blessed to have this for her,” Charlie says. “We really were. It saved her life.”

“Stories are the foundation of identity. We forge meaning and build identity.”

Andrew Solomon

I am moving my eyes back and forth as I chase the words of enlightenment in Solomon`s book. Sometimes I glance up, look out the window and stare at moving cars or people. I let my feelings, awakened from a line beautifully crafted, circulate inside. I let the meaning of it touch me, and let the aftershock of new insights and hope explode. I want to inspire. I want to live.

The power of books, and the people writing them, can never be unappreciated. Instead of learning every lesson ourselves, we can let other words touch us by reading and listening to other`s experiences. The last week, I have either let my eyes rest on «The Noonday demon» or listened to “Far From the Tree “. Andrew`s two books feed you with experiences and knowledge from the first to the last page. The first digs deep into Andrew`s personal depressive demons, the other explores learning disabilities and challenging diagnoses like autism, schizophrenia and down`s syndrome.

Both books have a plethora of examples fitting the themes like a glove. They both blow life into theory, by letting us feel the people`s pain so we can also feel it. As psychological theories shows, you learn more when emotional. Another thing I like, is that my eyes never bumped into walls of bad writing, you simply float from page to page, only irritated by lack of time to devour everything at the same time (I have wished many times that I`d taken more time to learn to read faster, like I tried for a while).

In addition to relevant stories from people with different types of problems, he writes about the newest research and even test many of the methods himself. He is not afraid of testing even alternative approaches that hasn`t been researched much. This is done in a balanced way since he manages natural skepticism blended with openness for new experiences at the same time (he liked EMDR).

I`m not sure how much time he`s used on the books, but I do know he`s been travelling all around the world (Bali, Africa, Europe and of course many states in USA) and investigated both medical and theoretical theories by reading and talking with professionals with diverse thoughts. He even tried to talk with America politicians (who sadly had their hand tied). It is clear he has taken the time necessary to write the book, even if he had to stop writing when Mr. depression knocked on the door.

Another positive feature of the book, is the compassion towards people with a variety of conditions most of us would automatically turn our backs too. He is honest while describing his thoughts and experiences, and doesn`t try to walk on the water with the work he`s done. He has a down to earth attitude, also when it comes to the description of own shortcomings. He writes he can feel self-absorbed at times, and tries to look own motives in the eye if they walk next to him. This acceptance blend together with curiosity, and the end-product is two of the best books I`ve read this year. He talks about the magnificent courage of the interviewees, but seldom points to his own. If he mention it, he talks about how he should have written more, and he is humble when presenting different views.

I must not forget how much knowledge he has managed to fit in between the true experiences of people who fight every day. He is capable of doing this in a very readable way, and because I was triggered by the stories before and after the facts, I remembered them more easily. He presents a cocktail of different treatment options, and is not judgmental or pressure his ways of doing it, on others. Once in the book he states that people can use whatever they want, as long as it helps. This shows more than anything, that he writes (among other reasons) to help others who suffer.

What touch me the most is his own insight as to why he writes; Because it gives hope. He chose the stories of people who impressed him, which doesn`t mean that you won`t see the dark sides of depression or learning disabilities, because you will. It just means that he again uses his ability to balance between everything with grace and style. After my opinion, if others find it biased towards a positive view, I think it`s fitting. After all, we usually don`t learn so much if we can`t see what we can do. Thats is why they have anti-smoking advice on the cigarette packages. You can`t jump into the water if you don`t know how to swim.

Schizotypal personality disorder

Photo by: Vlue

Definition

Schizotypal personality disorder is characterized by an ongoing pattern in which the affected person distances him- or herself from social and interpersonal relationships. Affected people typically have an acute discomfort when put in circumstances where they must relate to others. These individuals are also prone to cognitive and perceptual distortions and a display a variety of eccentric behaviors that others often find confusing.

Description

People with schizotypal personality disorder are more comfortable turning inward, away from others, than learning to have meaningful interpersonal relationships. This preferred isolation contributes to distorted perceptions about how interpersonal relationships are supposed to happen. These individuals remain on the periphery of life and often drift from one aimless activity to another with few, if any, meaningful relationships.

A person with schizotypal personality disorder has odd behaviors and thoughts that would typically be viewed by others as eccentric, erratic, and bizarre. They are known on occasion to have brief periods of psychotic episodes. Their speech, while coherent, is marked by a focus on trivial detail. Thought processes of schizotypals include magical thinking, suspiciousness, and illusions. These thought patterns are believed to be the schizotypal’s unconscious way of coping with social anxiety. To some extent, these behaviors stem from being socially isolated and having a distorted view of appropriate interpersonal relations.

Causes and symptoms

Causes

Schizotypal personality disorder is believed to stem from the affected person’s original family, or family of origin. Usually the parents of the affected person were emotionally distant, formal, and displayed confusing parental communication. This modeling of remote, unaffectionate relationships is then reenacted in the social relationships encountered in the developing years. The social development of people with schizotypal personality disorder shows that many were also regularly humiliated by their parents, siblings, and peers resulting in significant relational mistrust. Many display low self-esteem, self-criticism and self-deprecating behavior. This further contributes to a sense that they are socially incapable of having meaningful interpersonal relationships.

Symptoms

The Diagnostic and Statistical Manual of Mental Disorders , a professional manual, specifies nine diagnostic criteria for schizotypal personality disorder:

Incorrect interpretations of events. Individuals with schizotypal personality disorder often have difficulty seeing the correct cause and effect of situations and how they affect others. For instance, the schizotypal may misread a simple non-verbal communication cue, such as a frown, as someone being displeased with them, when in reality it may have nothing to do with them. Their perceptions are often distortions of what is really happening externally, but they tend to believe their perceptions more than what others might say or do.

Odd beliefs or magical thinking. These individuals may be superstitious or preoccupied with the paranormal. They often engage in these behaviors as a desperate means to find some emotional connection with the world they live in. This behavior is seen as a coping mechanism to add meaning in a world devoid of much meaning because of the social isolation these individuals experience.

Unusual perceptual experiences. These might include having illusions, or attributing a particular event to some mysterious force or person who is not present. Affected people may also feel they have special powers to influence events or predict an event before it happens.

Odd thinking and speech. People with schizotypal personality disorder may have speech patterns that appear strange in their structure and phrasing. Their ideas are often loosely associated, prone to tangents, or vague in description. Some may verbalize responses by being overly concrete or abstract and insert words that serve to confuse rather than clarify a particular situation, yet make sense to them. They are typically unable to have ongoing conversation and tend to talk only about matters that need immediate attention.

Suspicious or paranoid thoughts. Individuals with schizotypal personality disorder are often suspicious of others and display paranoid tendencies.

Emotionally inexpressive. Their general social demeanor is to appear aloof and isolated, behaving in a way that communicates they derive little joy from life. Most have an intense fear of being humiliated or rejected, yet repress most of these feelings for protective reasons.

Eccentric behavior. People with schizotypal personality disorder are often viewed as odd or eccentric due to their unusual mannerisms or unconventional clothing choices. Their personal appearance may look unkempt—clothing choices that do not “fit together,” clothes may be too small or large, or clothes may be noticeably unclean.

Lack of close friends. Because they lack the skills and confidence to develop meaningful interpersonal relationships, they prefer privacy and isolation. As they withdraw from relationships, they increasingly turn inward to avoid possible social rejection or ridicule. If they do have any ongoing social contact, it is usually restricted to immediate family members.

Socially anxious. Schizotypals are noticeably anxious in social situations, especially with those they are not familiar with. They can interact with people when necessary, but prefer to avoid as much interaction as possible because their self-perception is that they do not “fit in.” Even when exposed to the same group of people over time, their social anxiety does not seem to lessen. In fact, it may progress into distorted perceptions of paranoia involving the people with whom they are in social contact.

Demographics

Schizotypal personality disorder appears to occur more frequently in individuals who have an immediate family member with schizophrenia . The prevalence of schizotypal personality disorder is approximately 3% of the general population and is believed to occur slightly more often in males.

Symptoms that characterize a typical diagnosis of schizotypal personality disorder should be evaluated in the context of the individual’s cultural situation, particularly those regarding superstitious or religious beliefs and practices. (Some behaviors that Western cultures may view as psychotic are viewed within the range of normal behavior in other cultures.)

Diagnosis

The symptoms of schizotypal personality disorder may begin in childhood or adolescence showing as a tendency toward solitary pursuit of activities, poor peer relationships, pronounced social anxiety, and underachievement in school. Other symptoms that may be present during the developmental years are hypersensitivity to criticism or correction, unusual use of language, odd thoughts, or bizarre fantasies. Children with these tendencies appear socially out-of-step with peers and often become the object of malicious teasing by their peers, which increases the feelings of isolation and social ineptness they feel. For a diagnosis of schizotypal personality disorder to be accurately made, there must also be the presence of at least four of the above-mentioned symptoms.

The symptoms of schizotypal personality disorder can sometimes be confused with the symptoms seen in schizophrenia. The bizarre thinking associated with schizotypal personality disorder can be perceived as a psychotic episode and misdiagnosed. While brief psychotic episodes can occur in the patient with schizotypal personality disorder, the psychosis is not as pronounced, frequent, or as intense as in schizophrenia. For an accurate diagnosis of schizotypal personality disorder, the symptoms for schizotypal cannot occur exclusively during the course of schizophrenia or other mood disorder that has psychotic features.

Another common difficulty in diagnosing schizotypal personality disorder is distinguishing it from other the schizoid, avoidant, and paranoidpersonality disorders . Some researchers believe that schizotypal personality disorder is essentially the same disorder as schizoid, but many feel there are distinguishing characteristics. Schizoids are deficient in their ability to experience emotion, while schizotypals are more pronounced in their inability to understand human motivation and communication. While avoidant personality disorder has many of the same symptoms as schizotypal personality disorder, the distinguishing symptom in schizotypal is the presence of behavior that is noticeably eccentric. The schizotypal differs from the paranoid by tangential thinking and eccentric behavior.

The diagnosis of schizotypal personality disorder is based on a clinical interview to assess symptomatic behavior. Other assessment tools helpful in confirming the diagnosis of schizotypal personality disorder include:

Minnesota Multiphasic Personality Inventory (MMPI-2)

Millon Clinical Multiaxial Inventory (MCMI-II)

Rorschach Psychodiagnostic Test

Thematic Apperception Test (TAT)

Treatments

The patient with schizotypal personality disorder finds it difficult to engage and remain in treatment. For those higher-functioning individuals who seek treatment, the goal will be to help them function more effectively in relationships rather than restructuring their personality.

Psychodynamically oriented therapies

A psychodynamic approach would typically seek to build a therapeutically trusting relationship that attempts to counter the mistrust most people with this disorder intrinsically hold. The hope is that some degree of attachment in a therapeutic relationship could be generalized to other relationships. Offering interpretations about the patient’s behavior will not typically be helpful. More highly functioning schizotypals who have some capacity for empathy and emotional warmth tend to have better outcomes in psychodynamic approaches to treatment.

Cognitive-behavioral therapy

Cognitive approaches will most likely focus on attempting to identify and alter the content of the schizotypal’s thoughts. Distortions that occur in both perception and thought processes would be addressed. An important foundation for this work would be the establishment of a trusting therapeutic relationship. This would relax some of the social anxiety felt in most interpersonal relationships and allow for some exploration of the thought processes. Constructive ways of accomplishing this might include communication skills training, the use of videotape feedback to help the affected person perceive his or her behavior and appearance objectively, and practical suggestions about personal hygiene, employment, among others.

Interpersonal therapy

Treatment using an interpersonal approach would allow the individual with schizotypal personality disorder to remain relationally distant while he or she “warms up” to the therapist. Gradually the therapist would hope to engage the patient after becoming “safe” through lack of coercion. The goal would be to develop trust in order to help the patient gain insight into the distorted and magical thinking that dominates. New self-talk can be introduced to help orient the individual to reality-based experience. The therapist can mirror this objectivity to the patient.

Group therapy

Group therapy may provide the patient with a socializing experience that exposes them to feedback from others in a safe, controlled environment. It is typically recommended only for schizotypals who do not display severe eccentric or paranoid behavior. Most group members would be uncomfortable with these behavioral displays and it would likely prove destructive to the group dynamic.

Family and marital therapy

It is unlikely that a person with schizoid personality disorder will seek family or marital therapy. Many schizoid types do not marry and end up living with and being dependent upon first-degree family members. If they do marry they often have problems centered on insensitivity to their partner’s feelings or behavior. Marital therapy ( couples therapy ) may focus on helping the couple to become more involved in each other’s lives or improve communication patterns.

Medications

There is considerable research on the use of medications for the treatment of schizotypal personality disorder due to its close symptomatic relationship with schizophrenia. Among the most helpful medications are the antipsychotics that have been shown to control symptoms such as illusions and phobic anxiety, among others. Amoxapine (trade name Asendin), is a tricyclic antidepressant with antipsychotic properties, and has been effective in improving schizophrenic-like and depressive symptoms in schizotypal patients. Other antidepressants such asfluoxetine (Prozac) have also been used successfully to reduce symptoms of anxiety, paranoid thinking, and depression.

Prognosis

The prognosis for the individual with schizotypal personality disorder is poor due to the ingrained nature of the coping mechanisms already in place. Schizotypals who depend heavily on family members or others are likely to regress into a state of apathy and further isolation. While some measurable gains can be made with mildly affected individuals, most are not able to alter their ingrained ways of perceiving or interpreting reality. When combined with poor social support structure, most will not enter any type of treatment.

Prevention

Since schizotypal personality disorder originates in the patient’s family of origin, the only known preventative measure is a nurturing, emotionally stimulating and expressive caretaking environment.

“How long till my birthday?” She jumps up and down, pony-tails bouncing eagerly together with Dreams and Hopes. The mother exhales in exacerbation: “Five days. But can you please stop asking me every other second”. The girl claps her hands, enthusiastically, because five days is not a lot. She can survive five days, but oh, it will be hard. A girl some blocks away is just one day away from her birthday. Pony-tail girl would have been green with envy, but this girl, shrouded in clothes that her mother seldom wash, with greasy hair that covers her serious face. She tries to not think about the upcoming event. Birthday`s are the worst.

I write a lot about dissociation, and this leads to the side-effect of noticing it everywhere. This actually led me to say, when our leader asked us psychologists who wanted to check if a girl had AD/HD: “I don`t think I should do it, I`ll probably only see dissociation anyway”. The others laughed, and the task went to someone else.

I remember reading the book “En dåre fri” by Beate Grimsrud (excellent book) that described a girl with schizophrenia.

She described how she hears voices, and some of them were even given names. The same happens in a famous Norwegian book called “A Road Back from Schizophrenia: A Memoir” by Arnhild Lauveng. The protaganist is living a healthy life today, working as a psychologist. What fascinates me in the book, was that she described voices that belong to specific One was called the “captain”, and was very harsh on her. She never worked hard enough, and had to be punished often to “learn her lesson”. She also had a child part, and I think there was at least one more. Her diagnosis was schizophrenia, and she thought so herself, but it reminds me awfully much about dissociation.

“The zebra girl” by S. Åkerman

Many patients have been misdiagnosed with schizophrenia, when they really suffered from dissociation. Is it strange that I just found another book that reminded me about dissociation as well? The last week I`ve been reading a book from Sofia Åkerman (could unfortunately not find an english version of it). She was a patient for many years because she harmed herself seriously by cutting. She is now living a good life, helping others with the same issues as she, and is known in Norway, Sweden and Denmark for her books. In one of the last chapters from “To survive: A book about self-harm” she mentions a little story by Kristina Lugn (in picture) called “the birthday party”. A girl is celebrating her birthday, but she is not having fun. She tries to explain why not: “The enemy comes when I celebrate my birthday. He wants to destroy the cake, my gifts and harm the people around me”. Sofia fell in love with the story that no-one else understood. She put it under her pillow at night, and read it over and over. She got it. Maybe she had met Mr. “Enemy” personally. He never said hello in happy circumstances, but laughed and smiled when blood dripped and colored her future red.

Kristina Lugn

In my clinic, I`ve actually seen this: When everything is going like it should some part of my patients protests: It shouts: “You aren`t supposed to feel good!!” and maybe even feels threatened. The captain, The enemy or the dark side, have a lot of power. Loosing it is scary and uncomfortable for them. In some ways, it’s perfectly understandable that it push the emergency button by doing the only thing it can in a crisis: Hurting the one causing the threat.

We need to understand the captain or the dark sides, since it also has a story to tell (maybe even the most important ones). When A. Lauvheng started to get better, the captain was stiill sometimes there. He kept organizing and made sure she got the results she wanted. But he wasn`t allowed to criticize her anymore. Actually, his job was important, but the tough words were superfluous.

This Sunday`s recommendation:

The war against prejudice has lasted far too long. We have produced every type of commercial good, but the production of systems that take care of the people who buy the products, have not come so far.

Is this our legacy? Are we okay with it? I think not. Luckily, many others agree with me. One of the people who want to focus on a world were we pay attention to other human beings, is Elanor Lodgen, who dared to speak up in front of thousands of both normal and famous people. Would you? If you want to do some part, feel free to read this inspirational story. For those who want to take everything a step further, feel free to share this blog, its message or go to the post “project validation” and read how you after 30 seconds can make somebody`s day better, without paying anything other than a pleasant smile.
Thanks to all our guest-bloggers, readers and people who so far have fought for others. You are invaluable.

Raising Our Voices at TED 2013

It was a real pleasure and privilege to be invited to write for Mad in America. Partly because, like anyone with a shred of sense and (in)sanity, I am a great admirer and believer in Robert Whitaker’s work: epitomizing, as it does, George Orwell’s observation that “In a time of universal deceit, telling the truth is a revolutionary act.” But also because of the MiA community itself. As a relative newcomer to the site, I was immediately struck by the vibrancy, fellowship, and solidarity between individuals with differing views but a shared cause.

Community is a valuable concept for me, because the essence of my own madness was betrayal and isolation. Similarly, for many of us, the main crucibles for madness (loss, discrimination, abuse, or other injustices) are enacted on a silent, shameful, and lonesome stage. Social bonds, in contrast, foster the sense of reconnection, reclamation, and emancipation that are so important for recovery (Herman, 1992).

It was that sense of kinship and convergence – of shared perspective and shared beliefs – that fortified and sustained me when I was asked to present about my experience of voice hearing at the TED 2013 conference. In the run-up to the event, and constantly afterwards, people would ask, “How can you bear the pressure of doing a TED talk?!” A quick scan through the attendee list showed that, amongst 1,700+ other audience members, were Ben Affleck, Cameron Diaz, Bill Gates, Al Gore, Matt Groening, and Goldie Hawn. In my own session, amongst other brilliant individuals, was Vint Cerf, widely credited as a ‘founding father’ of the Internet. And there was me, a mad woman from Yorkshire! But it was the knowledge of all those others out there, “the rebels and renegades, truth-tellers, pioneers and freedom fighters” as Jacqui Dillon (2010) puts it, “all walking along the same path … seeking the same kind of justice” – that stayed with me and helped ensure I didn’t falter.

At the end of my talk June Cohen, one of the conference’s wonderful co-hosts, came onto the stage and asked me, with a respectful interest, whether I still hear voices. For a split second I hesitated, wondering whether to play it down with an airy “oh, not all that much now.” Instead I opted for the truth: “All the time,” I said cheerfully, “In fact I heard them while I did the talk – they were reminding me what to say!”

In the words of the British activist Peter Bullimore, “I’m a voice hearer, but more than that I’m proud to be a voice hearer – because I’ve reclaimed my experience.” And it’s the healing power of a community that’s enabled me to feel this way, particularly that which is embodied by theInternational Hearing Voices Movement (see ‘The Voices Others Cannot Hear’). Representing this critical, empowered perspective at TED really was a case of standing on the shoulders of giants, because I’ve been so fortunate to encounter an assemblage of extraordinary people – far too numerous to name – who have inspired, guided, educated, and encouraged me in both my personal and professional journey.

This includes, but is not limited to, courageous family members/carers who tirelessly fight alongside their loved ones, the heroic and dedicated clinicians prepared to challenge an established system, and revolutionary academics seeking and proclaiming the truth, no matter how unpalatable their contemporaries might find it. And, of course, fellow survivors: those who have been victimized and demoralized beyond endurance, but who have nevertheless negotiated their way out of the blackness and emerged, triumphant and phoenix-like, with a spirit, awareness, and energy that gives others the inspiration to do the same. It was the fusion of these alliances and perspectives that enabled me to stand on the TED stage and talk about the delirious, frenzied depths and exhilarating rewards of my voice hearing voyage; not as an ex-psychiatric patient with a ‘Bad Brain,’ but as a proud and maddened survivor.

The communication opportunities made possible by the internet means it’s easier than ever before to seek out a healing community: a listening ear, a space to be, a place in which to speak truth to power. Communities that acknowledge our right to own our experiences and make sense of them in our own way; our right to freedom, dignity, justice, respect, and a voice that can be heard. The Amnesty International founder Peter Benenson observed that it’s “Better to light even a little candle than to curse the darkness” and over the years these little candles are flickering ever brighter, all over the world, illuminating the massive flaws and injustices in a system that blames and denies, protects the powerful, and pathologizes the survivor. And, equally, the light from these candles are blending together to forge a social and psychiatric response to mental health crises that promote genuine healing and growth (however the person in crisis might choose to define it).

There is still a long way to go, many more obstacles to overcome, many more untruths to expose and misconceptions to challenge. But I believe, without doubt or reservation, that it’s happening. And it is empowered and empowering communities that have made it happen, and will continue to energize and sustain that change: the impetus to change the world! In The Impossible Will Take a Little While: A Citizen’s Guide to Hope in Time of Fear, Paul Rogat Loeb states that “Those who make us believe that anything’s possible and fire our imagination over the long haul, are often the ones who have survived the bleakest of circumstances. The men and women who have every reason to despair, but don’t, may have the most to teach us, not only about how to hold true to our beliefs, but about how such a life can bring about seemingly impossible social change.” Increasingly, these are no longer battles that we are condemned to fight alone. Rather the growing strength and solidarity of our communities show the doubters and deniers that, for all their opposition and resistance, it’s too late: the revolution is already taking place.

So, as a final thought… Robert Whitaker, Jacqui Dillon, and John Read for TED 2014. Viva la revolution!

Eleanor Longden’s talk is available to view on TED.com. The accompanying e-book ‘Learning From the Voices in my Head’ can be purchased via Amazon.com, Apple’s iBookstore, Barnes and Noble online, and the TED Books app for iPhone and iPad.

Eleanor LongdenEleanor Longden is a doctoral researcher who has lectured and published internationally on aspects of voice hearing, trauma, psychosis, and recovery. She is current coordinator of the Intervoice Scientific Committee and a trustee of the UK Soteria Network.

I love reading, and the last months I have read some good “based on a true story” books that really gave me some wonderful insights into the human mind. I want to write a bit about the wonderful book I never promised you a rose garden, because it really captivated me. It wasn`t just the fact that it was well written, but it gave such an acute feeling of being there with the main protagonist, that it almost felt like watching 3D-movie. The book has also been shown as a movie, which I have not seen, but I can assure you that the book is really worth it, even if the film wasn`t (generally books give you something that easily might lack in movies, the persons thoughts, ideas and way of seeing the world. You must use your own imagination more).

Here is some information about the author:Joanne Greenberg (Helen Green is the alias she uses for the book)

“I wrote [I Never Promised You a Rose Garden] as a way of describing mental illness without the romanticisation that it underwent in the sixties and seventies when people were taking LSD to simulate what they thought was a liberating experience. During those days, people often confused creativity with insanity. There is no creativity in madness; madness is the opposite of creativity, although people may be creative in spite of being mentally ill.”
– Joanne Greenberg

I Never Promised You a Rose Garden is a fictionalized depiction of Joanne Greenberg’s treatment experience at Chestnut Lodge Hospital in Rockville, Maryland, during which she was in psychoanalytic treatment with Frieda Fromm-Reichmann. The book takes place in the late 1940s and early 1950s, at a time when Harry Stack Sullivan, Frieda Fromm-Reichmann, and Clara Thompson were establishing the basis for the interpersonal school of psychiatry and psychoanalysis, focusing specifically, though by no means exclusively, on the treatment of schizophrenia.

It is useful to keep in mind that Sullivan and Fromm-Reichmann were by this time renowned for their work with severely regressed patients, some diagnosed as schizophrenic and others who were not so easy to categorize, using nothing in their treatment scheme except psychoanalytically oriented psychotherapy. Though the use of medicating drugs was in its infancy in those days and most psychiatrists were using electroshock therapy, sleep therapy, and other bizarre forms of treatment, both Sullivan and Fromm-Reichmann resisted these practices and treated their patients, as they themselves would have like to be treated were they suffering from a similar state of collapse and confusion–as though what they really needed was someone to talk to.

It should be noted that they apparently enjoyed extraordinary success in their work, if “success” is indeed the right word, by the measure that many of their patients–like Joanne Greenberg herself–eventually left hospital for good, never to return. Today, when there is so much currency about the presumed causes of schizophrenia and other psychotic disorders–that they are genetically determined, for example, and that it is irresponsible to deprive such patients of the drugs that are now available to them–one wonders if it would be possible–indeed, if it would even be permitted–for people like Sullivan and Fromm-Reichmann to work with patients the way they did 50 years ago. Whatever the cause of schizophrenia might be–and nobody, despite what some claim, actually knows what it is–the treatment still depends on people like Frieda Fromm-Reichmann who are willing to sit with them hour after hour, day after day, and year after year for however long it may take to see them through their ordeal. As a young girl, Joanne Greenberg suffered from an ordeal of her own which her family only gradually began to realize was getting worse. At the age of 16 she was taken to Chestnut Lodge Sanitarium in Rockville, Maryland, where Frieda Fromm-Reichmann became her therapist. Her treatment experience lasted from 1948 to 1951. Ms. Greenberg remained in outpatient psychoanalysis with Dr. Fromm-Reichmann until 1955, by which time she was attending college. Their relationship not only served as a vehicle for Joanne Greenberg’s remarkable recovery, but was also the source of a friendship that continued until Frieda Fromm-Reichmann’s death in 1957. In fact, Joanne Greenberg, her mother, and Frieda Fromm-Reichmann had intended to collaborate on a book revolving around Joanne’s treatment experience, but Frieda died before the plan could be executed. A few years later, Joanne decided to publish a book about her experience on her own, an account that many believe demonstrates a measure of courage, literary power, and immediacy that is unparalleled in the literature on this rarefied and near-impenetrable subject.

As every psychoanalyst knows, the success of any treatment experience is never the result of one person, but the consequence of a collaboration between the two principals: a clinician who possesses the sensitivity and unflappability to contain whatever manner of experience a patient is capable of, and a patient who possesses the courage, grace, and determination to face whatever demons her history has dealt her. Clearly, Joanne Greenberg’s account of her trial is the story of two such individuals, and her courage to write such a book is an inspiration to us all, patients and clinicians alike.

In her presentation, Ms. Greenberg spoke informally about her relationship with Frieda Fromm-Reichmann for the first time before a public audience. She used the occasion as an opportunity to revisit her experience at Chestnut Lodge and to share it with those who are endeavoring to work with people who may be suffering a similar ordeal.

The author, Mr. Greenberg, really have a wonderful way of describing her inner life, that makes it all so alive. Sometimes I had to stop and just soak in the words, feeling the pleasure through my spine as I read through them again. There isn`t many books that give me that feeling, but some of the descriptions were so poetic and at the same time intelligent, that I was really moved. The interesting thing is how the work with the therapist is so closely woven together with her experiences. This adds extra spice to the story, there are so many wonderful metaphor, chilling, because you know they were so much more for her when she lived in the schizophrenic confusion. It was real pain, and the blood on the walls were her way of describing it.

If you are somewhat interested in the psychology of the mind, this will NOT be a disappointment!

I am a psychologist working as a trauma therapist in Norway.
I am blogging about my life and psychology-related topics. I am also working on a book about my life and work, that will be published this year.
Thank you all for visiting my blog.